Effect on parents; rewards

The experience of having a child or children on the autism spectrum greatly affected the lives of most of the parents we interviewed. Parents talked openly about both the positive and negative aspects of this impact. Many described their children in glowing terms; these descriptions are presented in ‘The children’. Most parents described their children as “very rewarding”, “refreshing”, “hilarious” and “really good fun to be with”. Many parents also felt that they themselves had benefited and become more understanding and less judgemental of difference.

Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.

My working life has been greatly affected [sigh]. I used to work as I said in the music business and then I had my daughter and I used to run, before we knew she had Asperger syndrome, I did things from home I had a music group for pre school kids and a drama group and all sorts of stuff like that. And then when she got diagnosed with Asperger syndrome I become so focused on that and became so knowledgeable and become known as a useful resource of knowledge about the condition, that I was approached by lots of people to do talks and run courses, which I have done. We have run Asperger's courses at our local community centre. I now go round to talk to mental health teams, schools, colleges, social care, departments and to give talks about Asperger's raising awareness and of course I have got a teaching qualification so I also have a job working at [college] teaching Asperger's youngsters, well not youngsters, between 16 and 19, but they come in through the learning disability route because they have, they went to special school and got a statement and stuff, so that is the area that I teach, so if I hadn’t known about Asperger syndrome, if it hadn’t hit me all these parts of my life which I never knew I had the ability to do before, have come about simply because my daughter had Asperger's.

Otherwise what would I be doing now? I am too old to be in the music business. I would have left long ago. I would have been an old dear doddering around in a mini skirt and red hair. That wouldn’t have suited. So I don’t know where I would have been. Perhaps I would have just been married and pootling around in the garden, although knowing me, probably not. I would have got involved in something. I would have done something with my life. But Asperger's has given me purpose and meaning, confidence, value myself more because I know that I am valued by other people. So in that sense from the object of an intellectual point of view, it has been a positive for me.

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48

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Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British

I suppose for me, it is like a lot of things there are some parts of it, that you think well I wouldn’t have been without this and I ask myself the question would I rather he wasn’t autistic at all, because some people actually are thrilled to be autistic. And I suppose the, it is not that I mind him being autistic, it is just the rest of the world because they’re not, they can’t see it, you know, they only see the negative bits of it.

So it’s... I couldn’t come out wholeheartedly and say I am glad he is autistic. I am glad he is autistic as long as the rest of the world can cope with it but it is when the rest of the world are difficult about it. I sort of think well, [pause] I keep coming back to this business of, if he hadn’t got any labels I would still be sitting here saying to somebody, “Oh you know what he has done now”, or “we are going through so and so”, because you know my friend would be sitting there as another mother saying well, yes, and [name] is doing this or you know [name] is doing so and so and I wish they weren’t and you know they were out too late. And had I put over this point about … So yes, it has, I can’t say it hasn’t had a profound effect. I would be lying to myself. And I suppose I don’t mind he is autistic, I just mind it is so difficult sometimes. It would be easier if it wasn’t.

Some parents' views of disabled people had changed considerably and they had learned to value disabled people in a way they hadn't before. For example, one mother had realised “that everybody who might have been written off by society have something so valuable that they can give to their mums, their dads, to society, to themselves”. Another mother had learnt that you “never know the full story” and it was wrong to judge other people. Some parents also said their non-disabled children had learnt to be more tolerant and accepting.

Some parents expressed deep appreciation of their children’s achievements and the immense pleasure they got from their children learning to talk or play with others. One mother said she would be “on the ceiling for a week” when her daughter learnt to say “Mummy”. Another said, “I wouldn’t swap them for anything because I think just having them is wonderful.”

Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.

There was actually an autistic unit half a mile up the road from where we lived before we moved and I knew – a young lad he was only eighteen and he worked there and he used to say, “It is fantastic. You know when they learn to do something new. It can be something, such a little step for your sort of typical child and then for an autistic child to suddenly get the grasp of how to do something, it is absolutely huge”. And now after thinking back I keep thinking he was right. He was right. Just a little tiny thing for my boys is such a big step for them. And that is what I tend to sort of think of now. Rather than what they can’t do I think of the little things that they achieve and it is absolutely brilliant.

You know they can be so rewarding as well. So it's … yes, it is definitely, you have to see it as a bit of a challenge I think. But at the same time the rewards are fantastic. It is like the first time Joseph said, “I love you, mummy”, independently, it was just great. And I can remember the first time he answered me back as well. I mean he would repeat things that I was saying to him but he never used to sort of really answer any questions or anything and he was upstairs and he was being a bit of a pickle and I said to him, “Right,” I said, “You get down these stairs now”, and he just looked at me and he went, “No”. And I just thought, he has answered me back. I thought this is great he has just answered me back and I was just so excited, I just went off into the question and did a bit of a dance, because I thought, “Wow he has answered me back. It is great, you know. He has done something normal, some normal behaviour totally independently.” I mean most people would be horrified the first time a child answers back but to me it was fantastic. So it was, yes it was great.

Several parents were involved in support groups or campaigning for better services for disabled children, and that they could be useful and productive gave them satisfaction. One father described how, “If Andrew wasn’t autistic then I would have just carried on my own little life, the way I was doing it before”. Instead he had set up a support group and met a lot of different people (see ‘Support groups’).Some parents were also glad to be out of the “rat race” of buying designer football boots and the “latest gear”.

Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.

Have you been involved in any support groups or anything like that ?

Jane' Yes. I am quite actively involved. And at first I joined our local support group and it has got over a hundred members and I met quite a few people through there, good friends through there that have really helped me and explained things. But I have taken, from that support group I have joined up with three other groups and we are campaigning for services locally to be improved. And I really like that aspect of it because … something positive has come out of it. It is something positive that I can do. I don’t, we don’t sit around moaning about our child’s condition, what they can do, we do something really positive to improve the chances they have in life through education, so we are really quite, we are funded by DFES and Treehouse, so we get together once a month and we discuss things and we have different professional people come to the meetings and we are hoping to fund our own research in [town] regarding children with autism, and it feels really empowering, because I am actually doing something good out of it. It feels really good.

Do you get involved in any support groups?

Dan' No. I leave it to the captain here. Full speed ahead.

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Bobbi, a part time administrator, and her husband have two children; Jack aged 8 and Charlie aged 6. Ethnic background/nationality: White American.

Well I will give you an example of what happened when his assistant couldn’t make it one day when we were going for a school trip. The school trip was to [area] which involved taking Charlie on the tube, which he is perfectly happy to do because we have always been like, let’s go. Got him sort of over that when he was quite very young, he still doesn’t like tunnels, still goes like this, but on a tube train, this one friend of his kept saying over and over again. “Charlie doesn’t do any work. Charlie just messes around and plays all day.” And the first couple of times I was like, “Oh no, no, he doesn’t.” Because of course the teacher was there and head of the school was there and I didn’t want to overstep the mark, but unfortunately we were delayed. We were sitting in Bank Station and the child said it again, and I turned and I said, “Well no, actually,” I said to the child. “You know, that is not necessarily the situation.”

I said, “Charlie actually works very, very hard.” I said, “Do you see Charlie go to different groups during the day?” And he is like, “Yes, I do.” I said, “Well that is when Charlie is working very hard.” I said, “Charlie learns differently than you do.” I said, “We are very good at different things.” I said, “I personally can’t do numbers. I can’t add numbers up in my head. It is very, very hard for me.” And Charlie of course jumped in and said, “Oh two plus two is di dah di.” And growling off numbers. So I said, “See Charlie is very good at numbers.”

And I happened to know this kid was very good at writing. I said, “You are fabulous at writing.” I said, “So we all have different things that we are very good at and very not good at.” I said, “And we all have things that we are very afraid of and we are not so afraid of, that we can be braver sometimes and we can be very afraid other times.” I said, “Have you noticed that you know when you try to go into the hall?”, which is one of Charlie triggers, I said “Charlie doesn’t like the hall very much, does he?” And he goes, “No he doesn’t.” And then the one kid next to him says, “Well I don’t like spiders.” I said, “Well see, there you go. We are all different. We all have different things that we are good at and we all have different things that we are bad at.”

I didn’t [go] very much further than that. Because to bring the story back further, I have been in talks with the National Autistic Society to get a representative to come to the school and a local representative said to come to the school at some point to talk to the teachers and I also want to get the parents involved as well. And I also know that his teacher is trying before the end of the term, she is going to try to do a session with the kids about their strengths, their weaknesses and how we are all very different. So I didn’t want to sort of overstep.

But I did then say to the child because Charlie has been told about Asperger's, he is told that he has Asperger's, because he calls it ‘abergers’ sometimes and then he has a think about it and then the first part of the word really grabs him and he drags that part out, you know. So we have to be careful. But I did say to him, I said, “You know we all have things. Like I need glasses, you know, but…” I said, “Charlie has got something that is actually called Asperger's.” I said. “And that makes it difficult for Charlie to deal with loud noises, he doesn’t deal with lot

Some of the parents who had more than one child on the spectrum described how the autism was not that important. One mother said that she didn’t know if “it would have made any difference to me had they been autistic or not, to be honest. They are just my boys”. A few other parents said some of the challenges they faced were no different from the challenges other families faced with non-disabled children.

Barbara, a retired social worker, and her son, Howard, live together. Ethnic background/nationality: White British

Barbara' And even in The New Scientist there was something about autism but it was something that I have already written about on the web to one of these organisations. And I have seen people write since. You know they say they want a cure. Well there is no cure. And then they say ‘suffer from’… Well I can’t see it is suffer from. I think it is a different type of mind. I think you know, with all the technical stuff, computers, Howard is so good on a computer, because it is in a virtual world and because he has such concentration. Now most of us, you know, we haven’t got good memories because we are sort of diverted. Our minds are diverted so I mean. He has got to concentrate on one thing at a time so when he is on the computer he is better than the average person, because his mind is just going in one direction and I think that perhaps could it be, oh this wasn’t in The New Scientist but I sometimes think could it be that in autism they are trying to prepare future man for technology, future technology because yes. I am cross. You know I took to computers and I have got a little bit of something like that in me haven’t I?

I am sure Dad…. There was an old judge, Temple Morris, all his sons was an MP and he used to love Dad and talking with Dad because Dad was so knowledgeable although he had never had any education but he had read a lot and he used to call him, ‘Whitaker’s Almanac’ that was a nickname. We always get nicknames don’t we?

Howard' Yes.

Barbara' So Dad, Dad was clever in that way as well you know and as I say he was supposed to delicate and eccentric but … hm.

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Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British

The positive things. I met a lot of interesting people. I’ve found out an awful lot. I don’t know as I really wanted to know as much about autism, but it hasn’t killed me to find out. I couldn’t say that it hasn’t been enriching at times. It has. And of course I can’t say that I wouldn’t feel just being a parent anyway as being enriching because it depends which day you ask me. If you asked me another day I would say I definitely, you know, I wish I hadn’t put my name down for this at all. And I have got at the end of it you know I have got a bright loving healthy child who, you know, when you look at what some people are dealing with terminally ill children, you know the fact that Nick could be profoundly affected in you know he could be incontinent, he could not have any speech like some autistic children, or have you know some other awful disease.

So you know, you, it is all relative. You know we have had a lot of help, we have had a lot of help and we have had a lot of support. And I think these days, certainly you know at times when you look in the papers and so forth, it is almost trendy to be autistic [laughs].

You almost feel that, somebody, you know, is quite keen to tell you that they have got autistic tendencies. So that has been I think a much more positive thing, because I think if this had been happening to me thirty years ago I think it must have been, very, very difficult. And if you were perhaps somebody who hadn’t had much education yourself and you were trying to take on dealing with this type of difficulty especially you know balancing it with dealing with society, who I get the impression that at the time the child would have been in a special school or a health professional would have been saying, “Take him home, you can’t do anything with him. What are you bothering for?” You know, to have dealt with that people must have been devastated and you know to have come through that because you do read about the people who did you know, take on the system for their child or whatever, that must have been, you must have had an awful lot of self belief, a terrific amount.

So I think you know for it to have happened to me and for it to have happened to me now, that has been a positive. And I think you know another five, ten years and I would like to think that we will have moved on again, because you know it is in the news all the time and I do think generally speaking that most people are sympathetic and prepared to be supportive.